Fire and Rain

I have a love/hate relationship with medicine. Tiffanni takes six different medications every day, four times per day. A different combination to balance her mood, movement, cognition, and motor skills. We know what each of the pills do individually, but what happens when you combine this particular concoction? The body is a brilliant machine and on its average to best days, has the ability to regulate itself. Tiffanni’s body has a hard time doing just that, but it’s not completely unable. So, we cram pills into her hoping to balance its inadequacies, and then manage the side effects of the first pills that she took.

A few months after her diagnosis nearly six years ago, I went to see a therapist.

“I just don’t have strong feelings anymore,” I told her. “I used to get very excited about things, I would feel the giddiness of new exploits, excitement before a trip, I had more ‘night before Christmas’ moments. I suppose the good news is that I don’t feel really low either. The pendulum of my emotions barely swings at all. Like sitting on a swingset and allowing the wind to give a push.”

We talked once a month for several months when she told me that I was depressed. I managed my mood fairly well on my own, nevertheless, depressed. She asked me if I would like to see the “Doctor”.

“It’s probably time for you to sit with the psychiatrist if you’re comfortable with that.”

Pensive, I responded, “My understanding of depression and medicine is this: when we go through trauma or grief, our bodies respond for survival. My body believes that if I were to feel all of the feelings that come with what I’m going through, it would be overwhelming. So, it has shut itself down in order to survive and make it through each day. When it believes that I can handle the situation, it will correct itself.”

She agreed so I told her that I wanted my body to do what it does, to which she gave a final warning. “I’m not a pill pusher and I only want you to do what you feel comfortable with. While the body is brilliant, it also forms patterns and habits. If you wait too long to correct it, it will have formed a new normal of not producing the hormones at the level it is supposed to. This is when you have to take corrective measures.”

I left with a feeling of hope that my body was doing what it was supposed to do, but also a feeling of concern. I didn’t know how long I was supposed to wait until I did something- there was this arbitrary date floating around that felt like a point of no return. I wanted to feel again, but I didn’t want to feel everything. I wanted to be excited, and happy, and awe-inspired, and creative, and even sad- but I didn’t just want to be very sad. For a couple of years, I carried this weight of a muted life, a life in black and white watching people live in technicolor. Lumbering through Pleasantville desperately longing to see red.

For four years Tiffanni’s disease (have you ever noticed the word disease? Dis-ease. Something that destroys ease) was regulated by medicine. Her body never cooperated, but her mood and cognition saw little instability. She was bright, thoughtful, had a great memory, hopeful, and seemed to be optimistic. Outside of the challenges of her body, we lived a manageable life. But something happened last year. The medicine didn’t change, but everything else did. Everything.

Tiffanni began to have delusions, hallucinations, and fixations. There were people in our house trying to kidnap our kids. Beehives in the corner of the bedroom. Bugs crawling all over her. People were trying to hurt her. Others, plotting against her. And the fixations were undeterred, sometimes hysterical. She needed her nails done, hair cut, a mammogram, to go to Olive Garden- you name it and it was unceasing.

With that we began a new search for management. The current medicine didn’t match the symptoms anymore. And this wasn’t an easy fix. She has had one to two medicine changes every month for nearly a year. Nothing worked, nothing penetrated those OCD like preoccupations.

Sometime last year, I decided that enough was enough. I needed to feel again. My body had protected me long enough and had probably formed some habits that were keeping my emotions from cooperating. I went to see a doctor. Just a Family Practitioner, not a psychiatrist. I thought that he would make conservative changes that would ease me into feeling again. He prescribed some anti-depressant that I can’t remember. I used it consistently for two months when I determined that nothing changed. It wasn’t working for me.

I went back to see the doctor and he told me, “In your case, there is only one other medicine that I would feel comfortable prescribing. Your particular circumstances necessitate a very specific drug, so we’ll try this new one. If it doesn’t work, then I just believe that God has determined that this burden is for you to carry.”

Theology aside, that’s a lot of pressure. “If this little pill doesn’t work, you are doomed to haunt the doldrums forever.” Theology not-aside, I just flat out disagree with that characterization of God. Which reminds me of how often we create God into an image that is manageable, understandable, and controllable. But that’s another post.

I took the pill for several months. I never saw a change, a discernible difference in my energy, my mood, or my emotions. Either my body put up a stronger fight, the medicine didn’t work, or this is my burden to carry- surely there are other options…

Tiffanni’s body refused to respond to any of the medicine changes the doctor prescribed. I spoke with the nurse weekly, each time exasperated by the ineffectiveness of modern science. She would relay my descriptions back to the doctors who would readjust and tell me to check back in within 1-2 weeks. Every time, Tiffanni would have an initial good day, even two, and then back to chaos. We didn’t sleep, barely functioning, slogging through each day just to start over again.

It’s hard to describe the guilt of going to bed every night feeling like my kids were parentless that day. The balance between caretaking, parenting, working, and personally staying healthy was impossible. It’s like trying to keep four plates spinning that are in different counties- I couldn’t get to them all.

I could tell that I was emotionally exhausted because I would catch myself having imaginary conversations in the shower. Exploding into a heap of anger, berating someone or something with illogical indignation. That was a better alternative than actualizing those conversations. On my best days, I would levee the frustration long enough to complete my responsibilities only to hide the rest of the day. That is until the chaos began again.

Once a month I would say to the nurse, “Isn’t there something that can just sedate her, make her sleep or tired, just to get through the most difficult moments?” The truth is that I wanted a tranquilizer. I wanted a break, needed a break. The whole family did. We all knew what was happening and tried to keep it together. The kids would fight and argue with each other without the self-awareness to understand that what they were at odds over had nothing to do with what they were fighting about. And of course it wasn’t just the kids.

Finally, three weeks ago, the doctor obliged my request and prescribed more medicine than Tiffanni could handle. She was over-medicated. Nearly a year of lost memories. In an attempt to endure, my brain eschewed some basic functions and just survived. Sometimes survival is underrated.

For the last few weeks we have had no episodes of incoherence. Excitement is down, sleep is up. But Tiffanni is just there. A spot or two of life if you know what to look for and she squeezes out a smile with her eyes every once in awhile. She is permanently in a wheelchair and needs 24-hour care. But the kids are calm, fun, and acting like kids.

About a month ago I started feeling again. I think. Or maybe it was always there. A sense of time is a distant relative at this point. Tears and laughter came easy. It wasn’t an onslaught of dammed up emotions bombarding my brain. It was more an awareness of subtle moments. Instead of this moment sad and this moment glad, there were some gradation in events. A change in hue. It wasn’t just Red, yellow, and blue- I felt green, purple, and orange. I might have even caught a periwinkle. I sensed more than the binary of happiness and sadness- but longing, surprise, interest, loneliness, anger, and awe.

The problem is that the renewal of my emotions have coincided with the most weak and incoherent moment of this disease. It’s as if she has transferred her feelings to me. Loss and grief and pain and hopelessness and reality and lost time and loneliness and anger weigh a lot. I wake up some mornings before my consciousness awakens. Light and optimistic, only to be snatched back into reality. That’s an emotional whiplash.

There were things that I was cognitively aware of before, but now I feel them too. I have felt a lot lately and I’m not so sure that I want to right now. I suppose my body has this under control. There are positives and negatives to feeling and un-feeling and I don’t think there is a third way. You either feel or you don’t. I’ve lived a long time un-feeling and gotten used to it. I think that I’m ready to explore more of these emotions, avoiding none. Because I’m not sure that I can heal without experiencing them all, feeling the feels, headlong into all of my humanity. Or at least as much as I’m ready for this season. Welcome back pleasure and longing and loneliness and focus and bliss and worry and misery and peace and empathy and hope- it’s been awhile.

***

“I’ve seen fire and I’ve seen rain.
I’ve seen sunny days that I thought would never end.
I’ve seen lonely times when I could not find a friend,
But I always thought that I’d see you again.” – JT

39 Comments for “Fire and Rain”

says:

Jeremy I have been missing your blogs. But knew Tiffani’s condition (disease) (that is what I called my husbands dementia, easier than saying the dreaded d word. With disease you think possibly, cure or at least get better,) has deteriorated.
It says a lot about your parenting skills that the children are functioning well.
You are doing much better than you give yourself credit for. Asking God to provide your every need, to let you see all the colors, keep the darkness away, that you will have more joy, less painful moments.
Many prayers for you, Tiffani, the children
God bless each of you

Janet Smith

says:

Thank you for living your life honestly and unguarded. While Michael might not understand exactly what you are going through, he sees God in you, and it touches his heart. You mean so much to our family. Love and prayers always.

Dianne Montgomery

says:

I can only imagine. Your blogs help so many of us Jeremy, but I do believe they probably help you more than we realize. I have written since I was in junior high school and it has always helped me. I make a list to remember. I write a poem, or a song or prose to express myself, get a grip or as a form of encouragement. Writing is sometimes cathartic. You are real, and you express your feelings and emotions on a page in such form we can identify, in part, every emotion you are going through. I pray for you and your family. Consider yourself hugged right this second, big time Jeremy.

Carol Cooper

says:

Prayers for you all. It is so hard some times not to question why bad things happen to good, God fearing people. I had this conversation with a man a couple of months ago. He said “why is my beautiful, God fearing wife suffering so with the effects of a stroke? Why is God allowing this?” The only thing I could telling him is God promised an eternal life without pain or tears. Therefore I believe that the closer we are to God the harder Satan tries to pull us away from God. Prayers for your entire family.

Susan Bethea

says:

Jeremy I have no words to express how I feel after reading this. This is similar to how I felt 9 years ago the year I watched my son fight and loose his battle with cancer. That was just a year for him to suffer, I can’t imagine how it must be for you year after year. Again, I will tell you are surely loved by me and many others. My heart breaks but, I use that in praying for you and Tiffany and your children and your parents and Ron and Suzanne. I wish I could do more than pray, but at my weakest point my survival was dependant on the prayers of others, so I know it is important to I continue to do it. All this pain will someday bring about something wonderful and beautiful. Sending you love.

Reggie Hatcher

says:

Even through this medium, you continue to inspire and impact me as much as you did when I sat inside the youth room at Kingwood for 7 years. Your example perpetually makes me want to be a better man and most importantly, a more committed follower of Christ. As Eugene Peterson puts it, “a long obedience in the same direction.” Love you man.

Ben Heilman

says:

I cannot say that I enjoyed reading your post but I was thankful to have read it. And I was even more thankful that you were able to write it. I purchased your mp3 on amazon or iTunes when we were in the States for vacation in May. After I returned to Cambodia I was listening to it in the background during lunch one day and one of our Filipino teammates said, “I know this song.” And I told him that he doesn’t know it because it is one of the first times I had heard it and one of my college friends wrote it. I told him a shortened version of your story and he paused a moment. Then he told me, “I recognized the song because of the passion in it.” He sometimes swings up and he sometimes swings down in life. And he knows passion when he hears it.

Even though you weren’t feeling life, you have shared it with others through your music (and your blog). Thanks for the music. My entire family enjoys it too.

says:

I cannot even pretend to walk where you are friend, but your vulernability, your honesty and openness have made me feel not so alone. Thank you for that. I think feeling is important, otherwise we subconsciously sweep things under our proverbial rug, only to get doing headfirst when we trip over them later, catching a hole in an old worn rug where things start leaking out in whatever random pattern they can squeeze. Even in those deepest moments of loneliness, know that you are all known, and loved and carried to the foot of the cross in prayer again and again. It is the only way some.of us know how to help, not up close, but consistently on our knees, to pray without ceasing. good has given you all the blessing of such incredible people to help carry this burden, as we are called. Even you sweet friend are still in the process of being equipped for this calling, but know that every time you share, lives are being changed, people are being touched, mountains are moving. We will stand with you, but I want to thank you for giving us as your church family the ability to cry with you, worry with you, see those sweet eyes smile and breathe hope with you. Thank you for letting us, for letting me, walk beside you all through this. We love you all, and know that God is in control and He is good, all the time. 💜

Sharon

says:

Jeremy, I pray everyone who has someone with Huntington’s disease will have access to this best seller book you must write. You are one in a trillion for keeping your focus on God & what is best for your family while carrying such a burden! God will use your experiences to help caretakers, husbands, sibylings, children, friends, doctors & medical professionals experience reality. Keep pushing, allow yourself permission to run away at times for love, laughter, & song. I ❤️ All of you! Looking forward to your post on: “Theology not-aside, I just flat out disagree with that characterization of God. Which reminds me of how often we create God into an image that is manageable, understandable, and controllable. But that’s another post.” 👋🏼👋🏼👋🏼

Joy Standifer

says:

Wow! I’m in awe of your ability to describe your thoughts and feelings! Your capacity to feel again came through loud and clear in this post. It’s a terrible thing not to feel. You truly feel like you are in a black and white world–an endless plain with no hills and no valleys. Praying that today is a periwinkle kind of day!

Susan Kennedy

says:

Jeremy,
Thank you for opening up your heart to let us see inside. I can’t pretend to imagine what you’re going through, but your family is so lucky to have you. And I know, in spite of everything, that you are lucky to have them. God bless you, Tiffani, and the kids. You are more of an inspiration than you can possible imagine.

says:

Thank you for your vulnerability, Jeremy. I know that choosing to be seen in your own suffering can be very difficult. I understand and identify with how the grayness of depression allows a person to avoid dealing with an emotional intensity that is painful. I appreciate your perspective because it allows me to feel less isolated by my own. As cynical as I sometimes feel about God’s purposeful desire that our own suffering encourage others in their times of suffering, I also appreciate being on the receiving end of that encouragement, thank you. http://ofwildernessandrockyplaces.blogspot.com/2017/07/the-shadow-of-depression.html?spref=fb&m=1

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